“Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase

~ Camilla Laurentine

(Update 1/6/16: As of today, this post has been read almost 80 thousand times.  It was originally written for the Pagan and Polytheist communities and those who regularly read my blog, but very clearly it struck a chord with a lot of people.  I’m actually still pretty shocked by that.  I have made the decision to move any more writing on disability to a new blog, Wunderkammer by C. Laurentine, which will document living life as a disabled artist and activist.  So if after reading this you decide to follow me for my writing on disability, it will be over at the new blog.  Thank you.  Thank you a million times over for reading this.  Thank you. – Camilla)

A friend posts an article on Facebook about how the United States’ medical system does not meet the needs of those with chronic pain. This is a reality that I have experienced. This is a reality that I regularly speak to others who experience chronic pain have also experienced. About a month ago when I was at the doctor’s office for my annual exam, I overheard 2 medical workers talking about how they hate when patients say they’re in pain, because they know they’re over-reacting. I was horrified, but it wasn’t the first time I’d heard someone in the medical field say something like this.

When we talk about chronic pain, and disability in general, inevitably someone pops up to say something like the following:

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach. Putting our faith completely in the medical system is futile because at the end of the day Big Pharma (which sponsors the medical industry) is a for profit business and there will always be conflicts of interests. Many people are unaware of the fact that a lot of these illnesses stem from emotional issues that have not been dealt with. And when unresolved, it is these emotional issues that eventually manifest physically as pain or illness in the body. Doing some actual shadow work, to confront these issues and release them- along with meditation, Yoga, the right nutrition, etc.- can improve and in some cases even eliminate these illnesses completely.

This is an actual response to my friend’s post about chronic pain. I’m being kind and not putting names up. Some of you out there might be nodding your head to what is being quoted here right now. I am not exaggerating when I say that this was the second time in the same day I’d seen these sentiments said by 2 different people, and I’d not spent much time on social media yesterday. Being active in the chronic illness and disability communities, I see these statements on a daily basis.  I see the effects on those who it’s said to that don’t live their lives out in the public.

I expressed in a frustrated moment on Facebook that when I hear the words “Big Pharma” I stop listening, because I assume it’s going to be filled with a bunch of unscientific nonsense. And that got challenged, because obviously I’m making assumptions that aren’t nice. Yet I encounter the same situation day in and day out, and I have many friends with chronic illness and invisible disabilities who also express this same sort of experience happening to them regularly.

So let me take a big deep breath here as I calmly say this: I am sick of being nice about this shit, and I’m horrified that those fighting in the social justice realm are constantly ignoring what disabled people are telling them about their experiences.

As a community, we’ve risen to the occasion (somewhat) appropriately, trying to confront race, sexual orientation, and gender in social justice, even though I realize it’s not enough. We fall behind a little more in discussions on class, but we also have a very epic conversation going on about capitalism currently. But over and over and over again I see people fall short on the conversation about social justice for the disabled down to the point where able people regularly tell us we’re taking care of ourselves incorrectly or not doing everything imaginable to treat ourselves.

So, allow me to begin with why the above quotation is a big old line of shaming BS line-by-line. (Please do your best to remember that this is a disabled person telling you about her experience, and don’t come back with a “not all people” statement. Because derailing.)

I think chronic pain (and other illnesses for that matter) should be tackled with a holistic approach.

Stop and ask yourself three questions here… Do I suffer from chronic pain, which would allow me to actually be speaking from a place of experience? If so, did it help? If yes to both of these things, great! I’m genuinely happy for you, but please remember that everyone’s body is different (never mind diseases vary from person-to-person) and may not respond in the same way. But try not to use sweeping generalizations and talk from a place of your own experience.

If the answer to the first question is no, then stop talking. Just stop. As a white person, I wouldn’t try to tell a person of color what racism was about. As a cis-gender person, I wouldn’t tell a trans person how I think they should navigate their lives. Disability and chronic illness is no different. If you don’t experience, stop, listen, and learn. Your place is as an ally if you choose to be one, which means you need to stop and realize that you do not experience what a disabled person is talking about.  I hope you never do.

Putting our faith completely in the medical system is futile because at the end of the day Big Pharma (which sponsors the medical industry) is a for profit business and there will always be conflicts of interests.

Okay, so here is where I’m going to get into why as an ally, I really wish you’d stop using the term “Big Pharma…”

First of all, I want to show you what my medicine box looks like as a person with Ehlers-Danlos Syndrome Hypermobility Type, Idiopathic Intracranial Hypertension, 3 types of migraines, tension headaches, Hyperandergenic Postural Orthostatic Tachycardia Syndrome, Dysautonomia, severe environmental and food allergies, probable celiac (a comedy of errors cut out the gluten before I could get tested properly, and I’m unable to challenge because my reaction is documented as very severe), an immune deficiency, and Mast Cell Activation Syndrome. Add to that social anxiety disorder and panic attacks, because my body thinks everything is a threat to its life. Add onto a couple more suspected illnesses that I just don’t have the energy at this point to get tested for, because I spend at least one day a week in a doctors’ office. Add to that a few other things I’m just too lazy to type out, because they’re common but fucking painful all the same.  And I am one of the mildly afflicted EDS cases out there, which the Ehlers-Danlos is to blame for all the rest.

A white box filed with 20 different pill bottles and boxes

Hopefully you notice I take a mixture of prescription medication, over-the-counter medication, and supplements (Valerian, garlic, vitamin D, and vitamin C for starters, but my tea cabinet is rather epic since I am a bit of an herbalist).  None of this is making me sick, though it’s taken me over a year after diagnosis to balance it properly, and it has to be adjusted every few months.

Secondly, here is the fist full of pills I take every night before bed on a good night. On a bad night, it’s more.

A hand holding 10 different pills

Those of us with disabilities who are on medication regularly depend on “Big Pharma” to stay alive. The reason I wish people would just stop throwing the phrase around is that they are only looking into a fraction of what’s wrong with the medical system when they talk about it. And even if they’re not about to spout off some unsolicited advice or some shame to any disabled person happening upon them, they are in a minority of those who don’t use the phrase to shame people for doing what it takes to survive. And it is one of the disability world’s derailing “not all (insert majority)” statements if you try to argue that not all people talking about “Big Pharma” do these things.  The vast majority do, and I’m not the only disabled person out there saying this.

Do I think the pharmaceutical industry is corrupt? You bet I do. You know what else is corrupt that you’re not talking about when you say “Big Pharma?” The state governments in places refusing to reform medicaid so that poor adults are still going without medical insurance. I had a friend break her foot recently who didn’t want to have to go to the ER, because it was too expensive and she had no health insurance. The fact that medical insurance is so damned expensive that, before Obamacare, I could not afford to pay for it, I couldn’t afford to get diagnosed to prove I was disabled, and I went years suffering with absolutely no treatment at all while going into extreme debt every time I had a medical emergency, which with my diseases happens pretty often.

That ignores the fact that the entire medical system is an industry, meaning it’s meant to make money.  It is broken.  The entire thing is broken.

I am not saying that the pharmaceutical companies in America aren’t corrupt. I have a disease 1 in 100,000 people get. There is no approved treatment. There is no cure. I will never in my lifetime see either of these things, because it’s a rare disease that won’t make money for the pharmaceutical company if they spent tons developing it. Trust me, I have a very vested interest health and medical reform.

But I depend on medication to live and function in a relatively normal manner (most days). I take a diuretic to keep my brain from being crushed by my cerebral spinal fluid. I take a beta blocker to keep my heart from going into tachycardia just because I sat up or, Gods help me, stood up instead of laying flat on my back constantly, but also to make sure that my aorta doesn’t get any bigger than it already is by keeping my blood pressure down. If it does, I run the risk of it dissecting from my heart. I take an old school antidepressant to try to prevent a constant headache instead of just wanting to die from horrific head pain and various other symptoms any time a storm comes through.

And so, even if you aren’t about to spout off how I’m not taking care of myself in the way you feel I should be when you say Big Pharma, you are 1 in probably 60 people I encounter in a given month not using this term to lay some shame on me not working hard enough to not be sick.

You’re hyper-focusing on one part of a much larger problem when you use the term “Big Pharma,” and to put it bluntly, you’re using a term that is steeped in ableism the vast majority of the time. Which, my allies in social justice for the disabled, I know you’re not intending to do. So please, listen to those of us in the actual fight, and as an ally please stop talking about “Big Pharma.” It’s a buzzword that needs to go.

Many people are unaware of the fact that a lot of these illnesses stem from emotional issues that have not been dealt with. And when unresolved, it is these emotional issues that eventually manifest physically as pain or illness in the body.

First of all, again, this is blaming the chronically ill. Obviously we are just not willing to deal with our emotional problems, and if we did we would no longer be sick or in pain. We’re not even aware of the fact that we could be without pain…

Let me lay down some more anger and swearing here. (And YES, I have a RIGHT to be FUCKING PISSED OFF ABOUT THIS BULLSHIT. It’s ableism! It’s privilege and blaming the victim!)

I don’t know a single chronically ill person out there that doesn’t fucking know that emotions play into how they’re feeling physically. I have a disease that is literally triggered by stress or whatever my body perceives as stress, and I fear the day it becomes the disease that’s the next health nuts latch onto as the source of everyone’s problems like gluten currently is and everyone decides (again) that I’m a hypochondriac (which in the wrong situation could kill me). I don’t know a single chronically ill person that doesn’t know that there are people out there that 1) are so steeped in their privilege that they don’t realize they have absolutely no idea what it’s like to be in chronic pain, and 2) have all the answers and yet aren’t a medical professional of any kind.

Not only are you singing your able-bodied privilege here, but you’re coming off as a total dick.

Trust me, I’ve been in therapy for 20 years. My therapist regularly tells me that I’m the most well-adjusted chronically ill person she knows. All of my mental health issues have been proven through testing to be due to physical causes – Those being anxiety, panic attacks, and PTSD.  My celiac disease looked like bipolar disorder, but I hate mentioning that because I don’t want people to latch onto the fact that I’m in a minority of people who actually had something fixed by dietary changes and apply it to every other bipolar person out there.

Not everyone handles this stuff like me, though. That’s perfectly okay. Some chronically ill people have developed emotional problems because they are constantly being told there is nothing wrong with them. Some chronically ill people do have mental health issues, because they’ve gone years upon years without a diagnosis or being diagnosed incorrectly.

I have been at this so long and have heard it’s all in my head so many times from friends, strangers, doctors, and loved ones that, despite having a ridiculously long list of diagnosis and more specialists than I care to admit to, I still sometimes genuinely worry that I’m a hypochondriac.  Or worse, maybe I’m suffering from what used to be called Munchhausen’s…  Maybe I just want attention.  The worst part of this phenomena?  I’m not the only chronically ill person who struggles with this.

I have PTSD, because I spent decades in the medical system with doctors telling me I was a drug seeker, a hypochondriac, mentally ill, and (my favorite) lacking in a strong spiritual foundation. Which, if you really want to get down to it isn’t just ableist, but it’s sexist. Think of the Victorian woman diagnosed with hysteria. We’ve really just changed the name to hypochondriac. Women are more likely to get this label slapped on them, after all. Point in case: It took me decades to get a diagnosis; it took my husband 2 weeks to get the same diagnosis.

I could rant on this forever. Just understand this: We know. You are not more informed than the chronically ill people you are shaming. Some of us regularly have to deal with the fact that we know more than our own doctors about the diseases we have. Your skimming of WebMD and Natural Health News does not make you an expert.

Doing some actual shadow work, to confront these issues and release them- along with meditation, Yoga, the right nutrition, etc.- can improve and in some cases even eliminate these illnesses completely.

Might I suggest doing some actual shadow work to the person who said this, because what you just laid out was a giant heap of privileged bullshit. You may want to dig deep and examine why you feel so enlightened on other people’s lives that you have the right to judge what they are doing, holding it up to your personal standards of health.

When I say I’ve been on this path for 20 years, don’t you think that maybe I’ve done some actual shadow work? Because when you say “doing some actual shadow work,” what I hear is “You’ve been fucking around on your spiritual path, and if you would just buckle down and do the work…” This is steeped in puritanical judgment and is saying “If you don’t work hard enough, it’s your own fault you are sick.”

You may be well-meaning, but this is, once again, putting the blame on the victim. It is saying that they are not working hard enough to fix their suffering. Period. End of story.

I need to break this down more, though, so you hopefully examine it…

I will be the first to say that, in my own life, meditation helps me. I have been doing it since childhood, and I do it even when I hate it. Offering, prayer, and meditation are the first 3 things I suggest to someone wishing to embark on a spiritual path. If meditation was going to fix my disease, don’t you think it would have by now?

Secondly, you have no idea what a person’s body is doing, so you need to stop suggesting things like yoga. Let me explain why… I have a connective tissue disorder. This makes me really, really flexible. Like freaky contortionist levels. I have had absolutely no training, but my joints are loose from the disease I have. If I did yoga, I run the risk of making my joints even looser, which puts me at higher risk of spontaneous dislocations than I’m already at. Now if I had a yoga instructor who 1) I could afford and 2) knew what Ehlers-Danlos was, maybe I could do yoga safely.

But the point here is you are not an expert in my body. I am. I am not just sitting around wishing I had a magical pill that made all the pain go away. Okay, actually I am, but reality tells me that’s not going to happen, because that magical pill would also be free of side effects. I would like my pain and suffering to go away with a single pill, and you know what? If you hurt like me? You would, too. But since that’s not going to happen, I deal with pain in the best manner for me.

Yoga, my friends, would actually make that worse, but since you’re not a medical expert you don’t know how to treat my condition. You don’t know what I’m doing. You’re laying a lot of judgment down, because for some reason people in the holistic health community believe that the chronically ill are just sitting around doing nothing for their own suffering and simply want a pill to take it all away, never caring about addiction, side effects, or any other thing.

Check. Your. Privilege. Your ableism is showing.

And finally, to me one of the most important things is this concept of “right diet.” What is right diet? Vegan? Paleo? Local? Gluten-free? Grain-free? What is right for you is not right for me. As someone with multiple food allergies, food intolerances, and more than one disease that requires a specialty diet, I am begging you to examine your opinions on food in general.

Do you think that, as a chronically ill person, I am completely incapable of knowing what makes sense for my body? That’s what I hear when you say “right diet.” You know, as opposed to what poor people eat, which makes them fat, lazy, and diseased… Or, wait, is it the poor person’s laziness that makes them fat which makes them diseased? I can never keep classist food arguments straight, because I’m too busy rolling my eyes back in my head and screaming internally at people not realizing what they are saying.

I’ve been to a nutritionist, because I’m genetically at high-risk for diabetes II. This isn’t some new disease in my family. My grandmother, who was stringently organic and health-focused, had it. My father has it. It’s just something I’m probably going to get at some point, though so far so good! And I do everything in my power to delay that. That includes making sure I exercise regularly, and I eat a pretty protein heavy diet because it makes me feel better than refined carbs. The nutritionist didn’t understand why I was there, because my diet is shockingly healthy.

I also am incredibly allergic to eggs. I have a documented gluten-intolerance that is likely undiagnosable celiac disease, because I can’t gluten-challenge but have the genetics and symptoms for it. I cannot eat melon or sweet peppers without becoming violently ill. And I have an anaphylatic reaction to anything with nutritional or brewers yeast in it. I live in a house with a wheat allergy, a millet allergy, citrus sensitivities, and either a mild dairy allergy or lactose intolerance. We have 2 adults who on top of all of that should be on a low-histamine diet, and when one of our stomachs slows down (because EDS can cause poor stomach motility among other things) we have to be mindful of that as well.

We also have to have a high-sodium diet for POTS, which includes drinking electrolytes to stay hydrated on top of drinking an ideal of 2-4 liters of water a day.

Since I’m on a diuretic, my diet has to be high in potassium. Since I have IIH/pseudotumor cerebri caused by EDS, I have to have a low vitamin A diet, because vitamin A increases CSF… You know what the health food movement taught me? That white potatoes are bad for you, and instead you should have sweet potatoes… Except for me it’s the exact opposite. If I eat a few sweet potato fries, I get a headache.

If I haven’t driven my point home with this, let me be concise: What you deem as the right diet is not going to be the right diet for everyone.

Did you realize that a lot of disabled people are poor? So when you decide they’re not eating the diet you would like them to be eating, that you assume is making them sick, you’re not only making an ableist judgment, but you’re making a classist judgement as well. Maybe they can’t afford to be eating 100% organic, local, grass-fed beef on a gluten-free coconut bun.

Yeah, poverty and chronic illness sucks.

Any time my fatigue is so bad I only have the energy to fix mac and cheese, I have to shell out $2-4 for that box of processed convenience food, since it has to be gluten-free. Or I have to drain my energy more by fixing something else, which could take me out for a couple days. Or drain my wallet more by ordering food, which is basically impossible to find something we can eat out that also delivers… And since I don’t drive to keep everyone around me safe, since I could randomly go blind or lose depth perception, I have to rely on an equally fatigued husband to drive and get food.

So when you see your chronically ill friend drinking that Ensure that you’ve decided is loaded with toxic/dirty/wrong food, or you see them eating a hamburger from McDonalds, which might be the only thing that sounds good amidst endless waves of nausea? Stop fucking judging them for their food choices. Take some time to read what others are saying about the social injustice behind the food shaming diet and health food industries, because, yes, it’s there, too, friends.

You, my able-bodied friends, are only in charge of your own body. Not anyone else’s. And your “well-intentioned” judgement come off as privileged assholery to those of us who are living a daily reality with chronic illness or disability.

So in conclusion, please stop using the term “Big Pharma” if you consider yourself an ally to the chronically ill and disabled. Please?

Edit: Someone contacted me to ask if I’d change my usage of “cis-gendered” to the correct “cis-gender.”  I went ahead and changed it to reflect correct usage, and I wanted to publicly say thank you for doing so.  Not only do I consider myself an ally, but I’m also a language nerd who wants to use terms correctly.  If anyone else is interested in the explanation as to why, here is the link I was given: http://www.democraticunderground.com/10024810648

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131 thoughts on ““Big Pharma” & Privilege: Or Why I Wish Allies Would Stop Using This Phrase”

  1. You made many great points, the whole system is faulty and considerably broken, and I don’t particular trust the capitalist interest in pharmaceuticals for that reason….however anyone saying that they are trying to trick people into using meds when it is basically “in your head” is wrong and horrific. We need medicine, and medicine is a gift from the gods, doctoring is a gift from the gods. The fact that there is corruption and that the system is broken does not mean that the need and necessity is not there. People need to stop looking at the need to medicate as something unnecessary. It is very necessary for people who are ill. Yes holistic stuff, homeopathy, herbology etc can be useful to supplement medicine, but wishing it away doesn’t work….and ya know must medicine is manufactured from combining stuff found in nature in ways that help people. So folks need to stop that crap. Good for you writing this post, it needed to be said.

    Liked by 4 people

      1. No problem. Given that my fiancée has severe asthma and has several medications he *has* to take every day, I am thankful for his medicine as it is what keeps him with me. I have seen him go into severe life threatening asthma attacks, he was hospitalized for a week for one here recently. People who do not have to rely on medicine for being able to live any kind of life don’t realize just how much having medicine and access to it is important.

        Liked by 1 person

    2. I love what you had to say; it reminds me of my own rants with what my partner and I are going through physically, socially and culturally. I hoped you would expand on how the natural vitamin and supplement industry also has many corruptions, fillers, fads, additives, marketing to the undereducated and uninformed members of the upper echelons—while many doctors are not directly profiting from insurance or pharmaceutical spoils

      Liked by 1 person

      1. As someone who suffers from osteoarthritis in the knee, spine, and shoulders, this whole post is like YAAAAAAASSSSS because pain is just pain, and no one really *wants* to help treat it. People think that arthritis is like a Tylonol commercial. “Oh ow I can’t use my hands ow wah wah” that’s the mild form. When you have it in such an important area like your back and shoulders, what the hell are you supposed to do for relief? Hard core NSAID’s wreck your stomach if you take them for too long. Seriously. Naproxen, one of the only meds that actually works, will give me severe stomach pain if i take it more than a few days, and do you know how many cortizone injetions would be needed for my entire back? Oh lawd…seriously no. Just no. Those of us with chronic pain are left with so few options it’s depressing. Which they try to medicate with anti-depressants. I’m like “Dude, no, I don’t have a chemical imbalance in my brain, I have a pain issue. My pain is what is making me depressed because ya’ll aren’t taking me seriously” Ugh. it’s that vicious circle

        Liked by 4 people

        1. Somehow I’ve managed to escape arthritis everywhere but my spine. That’s still mild, but holy goats it’s honestly probably my most regular complaint. I live on a heat pad. I’m waiting for the day my daughter is done breastfeeding so I can take something more than Advil. I feel for anyone who deals with it. I know it’s in my future in other joints, and that thought keeps me awake at night. I want to punch the Tylenol commercials in the face.

          Liked by 2 people

        2. *applause* I can’t take the one thing that worked on my arthritis and herniating cervical disc pain, ibuprofen. 800mg 3-4 times a day gave me a pain free couple of years. Then my heart decided it didn’t like it and would do jumping jacks in my chest, then rest for a beat or two doing *nothing*, then jumping jacks again. So now it is pain, pain, everywhere pain. *blerg*

          Like

        3. Ha. Yeah. I’m on omeprazole permanently go to with being on NSAIDs permanently. (But I do love amitriptyline for neuropathic pain, heh.)

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        4. So so so very true. I’m on tramadol myself and it takes care of a small amount of my pain from occult spina bifida combined with arthritis at least, though very little. I’ve been taking aspirin before bed for years to further buffer it, thankfully so far without any stomach issues, but I consider myself as having gotten off lucky with that. But, being transgender, last Monday I finally started T therapy to begin transitioning and I was shocked at how unexpectedly so much of my chronic pain was at least halved! It honestly makes me wonder if there’s a difference in how testosterone buffers pain for men that women don’t benefit from because of far lower levels, thus lending to the idea that women have a better pain tolerance, wondering if it’s due to having to deal with more chronic pain without that buffer testosterone seems to provide, and so being more used to pain than men. I really would be interested to know if there’s been any studies on it, that would be one more detail to add to the list on here of the sexist dismissal of women with chronic pain and illness. If you think about it too, already women are more susceptible to bone and joint diseases like osteoporosis statistically. I’m just waking up, having had to finish reading this article just now after sleep in the middle of it, so I apologize if my thoughts aren’t flowing smoothly through. What I’m trying to say is, it’s possible a larger amount of ableism perceived is just as much sexism because women are prone to a larger range of certain chronic ailments that men become dismissive of because they have fewer sufferers of these ailments themselves. Men seem more dismissive of chronic pain on average and I’m beginning to see why. Testosterone, at least for me so far, seems to buffer it massively, and I mean to the point where even as a severe pain sufferer, it’s been almost the miracle pill to me (even if not a pill).

          Liked by 3 people

          1. That is *so* fascinating about testosterone. Thank you for the first hand experience. I don’t know that there would any way to get that info if not for people transitioning and talking about it!

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  3. Reblogged this on Rock of Eye and commented:
    All of this. As my own diagnostic spiral focuses in on what seems to be some soet of neurological malfunction on a massive level, I find myself at the butt end of too much of this bullshit.

    Yoga leaves me unable to walk properly for a day or two because my muscles shut down after too much work. I would love to eat what might be considered a more healthy diet, but I can’t stand up for as long as it would take me to prep and cook a meal and doctors appointments and medication eat up a lot n of cash. I’ve been in therapy for years and all of my providers think that I wouls feel better if I, you know, felt better.

    My attitude is that if one of my providers thinks it would be good to try a thing, I try it. However, I bristle at the yoga/eat only purple things/shadow work/pray more solutions offered because if that shit fixed what was wrong with me and others like me, i’d be all over it like white on rice. Can yoga cure MS? Will that eliminate the lesions on the brains and spines of an MS patient?

    What offends me most is assuming my medical stuff is because I am too dumb to try ALL THE THINGS to be better or because I choose not to chase down every single thing some random idiot on the internet suggests, like copper bracelets, foot detox baths, and fucking swimming with dolphins and becoming one with my inner indigo child. The internet does not hold an MD.

    Liked by 5 people

      1. Seriously. If the insurance pays for it, I will strap on my swimmies and pet blowholes until the co-pay gets too large or it doesnt cure my issues, whichever happens first.

        Liked by 5 people

    1. Oohhhh yes they do. Dead up in your face. Until you remind them you have PTSD/ODD/ADD & TBI…bc you get a faintly psychotic look in your eye. Heeheehee
      I used to “keep it hid” too…bah. Too much like work. Now I’m in the Peer Movement. Much more fun!

      Liked by 1 person

  8. All I can say is thank the Gods for Obamacare.

    I too get really frustrated by everything you’ve described here. Especially whenever other Pagans or occultists (who really ought to know better) start peddling garbage about how you just need to “work harder” on your spiritual path and blah blah blah, because your problem is that you’re an “armchair” something-or-other (which is also apparently a mental illness according to some folks, which I guess means that Pagans who are mentally ill aren’t really mentally ill, they’re just mentally ill – or something). Anyhoo, as someone whose wife also struggles with many disabilities, I tip my hat to you.

    Liked by 2 people

  9. Reblogged this on Weaving Among The Stars and commented:
    Righteous rant here. 3 types of migraines, RLS (severe for 18 years and will never improve), PTSD, agoraphobia, social anxiety… The last two developing and worsening due to the baseless assumptions and judgements of others who have absolutely no clue. Back, shoulder, neck, and knee pain which I’ve been struggling with for years is also worsening as of late. This day has been an incredible struggle for me. I thank you for this timely post.

    Liked by 1 person

  10. Reblogged this on Lean in to Joy (transition priestess, spiritual midwife) and commented:
    REBLOG; tag as *ableism* *allies* *bullshit la-la new age crap*

    From the post: “If the answer to the first question is no, then stop talking. Just stop. As a white person, I wouldn’t try to tell a person of color what racism was about. As a cis-gendered person, I wouldn’t tell a trans person how I think they should navigate their lives. Disability and chronic illness is no different. If you don’t experience, stop, listen, and learn. Your place is as an ally if you choose to be one, which means you need to stop and realize that you do not experience what a disabled person is talking about. I hope you never do.”

    Liked by 2 people

  12. You are right on, and it’s even worse when it comes to mental health issues. I’m only able to function because of my anti-depressant and I get told a LOT I should just “trust the Goddess.” A breath of fresh air. Brilliant post. I wish you had written this on PaganSquare. (Which is my site, and I’d love to have you there.)

    Liked by 3 people

    1. You should decidedly trust the Goddess to provide you with relief from your chronic condition. Including medication. 😉

      I will get my monthly quota up for my blog of PaganSquare, and I’ll write up something connected to this. I changed my blog layout, by-line, and hair color over here, and I’ve discovered a lot of people don’t recognize my blog or face anymore. Which makes me smile, because it’s been a year of change for the better in my life, and I sometimes feel like a new person anyway. 🙂

      Liked by 1 person

  14. Reblogged this on A Matter of Faith and commented:
    I have Psoriatic Arthritis, Fibromyalgia, Undifferentiated Connective Tissue Disease as well as Generalized Anxiety Disorder and Panic Disorder. I live in Canada so I have better access to medical care but still struggle with edit lists, medication costs, etc. It doesn’t stop the ableism, and pretty much everything else mentioned. I cannot sing the praises of this article loud enough!

    Liked by 1 person

  18. Thank you! I can’t express the gratitude. I don’t suffer chronic pain but I’m bipolar.

    I’ve worked hard with getting my pill count down. I now take just Saphris, Viibryd, and Adderal. Friends have stopped telling me how to do things and about big pharmaceutical and how I should go holistic instead because I don’t listen to them.

    I also have gotten to the point where I am a very proud bipolar. People don’t know what it’s like to walk in our shoes until they have. I’ve been in therapy, group therapy, and skill set classes. There is no magical wand out there that can transform a depressed almost suicidal Megan into a fun loving happy Megan.

    I need pills and will need pills to maintain a healthy life for the rest of my life. I’ve come to terms with that. I need other things too such as a support network, exercise, healthy food, and coping mechanisms.

    But whenever someone says that I should go holistic or I should try this or that I want to throat punch them. Doing something like that can kill someone like me. I don’t mean that figuratively but quite literally. Depression is a silent killer, many people loose that battle all the time. I refuse to be part of a statistic!

    Liked by 2 people

    1. Bipolar disorder is a hard thing to manage, and finding the right balance of medications to help is an art form. I was medicated for quite a while, and I’m still incredibly thankful for what it did for me. I’m still not 100% sure that what I’m dealing with is a rare remission; I have a written document for my family saying what I want should that be the case. The answer to that is medication and hospitalization if necessary.

      I feel like chronic pain and mental health issues aren’t 100% the same in the public eye, but they are definitely siblings in how they’re treated and carry stigma.

      Thank you so much for sharing your viewpoint and reading this post!

      Liked by 2 people

  19. Thank you. This is a sobering reminder to me that even when I think I’m trying to listen, my ableist and classist privilege is so deeply ingrained that I don’t realize when I’m being a self-righteous asshole, which is way too often. I appreciate the reality check.

    Liked by 3 people

  20. Hear hear 🙂
    Fellow EDS-er here. I’ve mainly issues with the chronic fatigue and brain fog and I can’t even begin to count the number of people who have tried to make me see the light. Every new person I meet, oh what do you have, oh let me google that, oh have you ever looked into….
    Sigh.
    It’s well meant, but they have no clue what they are basically saying to you (all of what you wrote above lol) and how they force you into a defensive position (no, that actually does not work for me, no that sounds like utter nonsense: ooh you just don’t really want to get better do you, raaaaaaaaaaaaaah <—— that's me running through the house tearing my hair out in despair, well ok, that's me sitting behind the puter IMAGINING doing that because I am too tired to be actually doing that hahahahaha).

    Liked by 3 people

    1. Imagined fist bumps of EDS solidarity (because we wouldn’t want to knock anything out of place actually doing so!). The fatigue is actually my main complaint as well, so I hear you.

      Like

  21. All the yeses.

    I take pills that keep me from progressing to death faster. I take pills that keep my chronic pain at levels that allow me to function. I am privileged that my doctors DO trust my pain.

    My father has a kidney transplant and takes many many pills that keep him from dying. My brother had a transplant which ultimately failed and is back on dialysis but also has pills and procedures that literally keep him alive.

    And as for me? I love massage and oils that smell pretty and heat and cold packs and all sorts of things.

    But sadly. all NSAIDS are a no go because of a genetic (see references to father and brother above?) kidney condition. Even super ones like Torodol for migraines or steroids for severe inflammations.

    Even more sadly ANY other pain pill is mostly a no go because of the worry of rebound migraines. I’m supposed to limit pain pills–even a Tylenol–no more than once a week. Actually to one time a week but hell.

    Besides the chronic migraines and the bursitis in my hips and the arthritis in my hips and back that I can take exactly nothing for and the back pains from the enlarged kidneys and the kidney stones and the bursting cysts and the weighing of if the pain is bad enough to be worth a possible migraine tomorrow….besides all that and the side effects of the meds I do take to mitigate the damages…I have vertigo which makes PT difficult and often impossible but my ortho won’t give me steroid shots (which ARE allowed) for the bursitis because if I really WANTED to be well I’d try PT first because a large needle jammed directly into what hurts is obviously the easy way out.

    So next time some bollock brained shite-headed rectally-refused wart-assed defiler of roaches even SUGGESTS that 1. using anything Big Pharm is just buying into made up illness and/or 2. Chronic illness always stems from some emotional issue and/or 3. Chronic pain doesn’t need medications it needs yoga and meditations more I’m going to (just in my head as a fantasy, of course) jam a shiv in both their kidneys, take a hammer to their head and set fire to their brain, stick pins in their inner ears to ruin their balance, smash their hips and back, and then tell them to meditate and yoga the fuck their way out of it….

    Liked by 2 people

    1. Burstitis is one of those things that I didn’t list, because it’s so common… But oh, how it’s high on the list of things I would absolutely love to have something that worked for it.

      I hope you get someone to listen to you about the shots for it, since you can use them!

      Liked by 1 person

  22. I must give a counter perspective here. I am almost 30 years old and have suffered from chronic pain most of my life. Much of that has had to do with the consequences of emotional repression (though I think this is a far too simplistic way to look at it); much also has to do with the improper and excessive prescription of pharmaceuticals. My lifeline to better health and wellbeing has been through mind body approaches including yoga and “shadow work.”

    The ironic thing about the statement quoted is that it is in many ways true. Is it pejorative? Yes. Ignorant? Yes. It belittles those with chronic illness by making health seem overly simple. A glorified, “you’re doing it wrong”. It is said from a deeply ignorant and superficial perspective, but it nonetheless contains truth.

    Is yoga for everybody? No. But creating a deeper relationship with the body–some would say that is the definition of Yoga–is. So is taking a look at ourselves clearly. For me seeing the identity I derived from being sick –wearing it like a badge– has been instrumental in beginning to free myself from it. As long as it constituted who I was, I couldn’t be healthy (even if I wanted to). It is a long and agonizing process.

    It is true, every body is not equal. The techniques that have been working for me may not work for everyone. However the scientific literature on the effectiveness of mind body techniques is growing. It is more and more clear that they work via particular interactions between the brain, the nervous system, and the endocrine system. That our thoughts cascade throughout our bodies. This is not hippie BS, it is being studied at Harvard (check out the Benson Henry Institute). It isn’t magic, nor is it effective overnight, but it is really a potential in each of us.

    I dont presume to know about anyones particular condition. I think that presumption combined with an ignorance of chronic illness is what the author is taking issue with, and in that respect I can identify. All I am saying is that the principles contained in the aforementioned quotation, even if it was spoken in ignorance, shouldn’t be ignored.

    Like

    1. And here we the #notallchronicpainsufferers!

      1) Thanks for proving her point about folks and their unsolicited advice.
      2) No, you “must give a counter perspective” is untrue, and the same things that is being railed against.
      3) Victim blaming with the shadow work comment.
      4) The arrogant assumption that comes with comments such as yours that the person *has not tried any or all of the things* because they are too uneducated/blinded by Western medicine/have lived under a rock. Especially arrogant when it comes from the Pagan community.

      Gods.

      Liked by 6 people

      2. I’d like to point out that the audience here, as evidenced by my stumbling into the pagan community, is pretty large. So I am not really speaking to the OP or anyone in particular and assuming they haven’t tried everything, but to anyone that might be suffering and read this piece. I wanted to make a distinction between sound techniques that work for many people, and the ignorant attitudes of those who may spout them. If you’d like to include me in that list, ok. I don’t know what people are dealing with here. But it appears from the comments that a lot of people are frustrated and disillusioned with people telling them to meditate. My unsolicited advice was not to throw the baby out with the bath water.

        Like

        1. You’re still being an ableist, classist, privileged, victim-blaming condescending fuckbagel who deserves nowt but a few dozen boots to the head. Your “counter-perspective” is nowt but your convenient excuse to talk down to the poor benighted cripples who CLEARLY don’t know how to magically cure their OBVIOUSLY made-up conditions by following your OH SO EASY steps.

          In summation: Fuck right the hell off, you ableist shitbag.

          And don’t EVEN think about coming back at me with any respectability politics bullshit or crying about name calling, because I am not even listening to that nonsense. You came in here, showed your ass not once but twice (and will, I am sure, do so a third time because privileged shits like you always gotta get the last word on the marginalised to flaunt your privilege), and you’re being rightly beaten down for it. So I suggest you fucking deal and fucking check your privilege.

          Liked by 1 person

          2. You may–I commented without realising that I still have a WP account. But yes, “fuckbagel” is in the public domain and may be shared widely. 🙂

            Like

        2. Oh geez, I feel so silly for my reply now! I am SO much better informed thanks to your re-‘splaining! Oh wait. Nope, I’m wrong. I was correct in my reply to you. I appreciate you showcasing that. Feel free to sod off now.

          Liked by 2 people

  24. Reblogged this on Pretty Pink Brain Confetti and commented:
    I had to share this beautiful piece. I couldn’t even tell you how often I hear people tell me that my problems aren’t real. That they’re all in my head and I should just get over it. It sickens me.

    Liked by 1 person

  25. I’m a cancer survivor. The worst offenders in my world are the crazed cannabis oil & black salve advocates. I have grown to hate them & their bullshit. Chemo saves lives. And yes, cannabis has a role to play, should be researched, & should be legal. It’s not primary treatment!

    I also work in the cancer wellness community, and in our org, we’re very aware that “big pharma” are critical allies in treatment. Serious, life threatening damage is done by the likes of that Whole Pantry fraud and others who promulgate these dangerous lies. Not all in the cancer wellness community are allies.

    Thank you for your powerful advocacy and beautiful statement here.

    Liked by 4 people

  26. I agree with all the everything here, but wish to point out one of my own peeves: people who advocate a ‘holistic approach’ at the chronically ill without apparently having half an idea in their heads as to what that term means.

    A true ‘holistic approach’ would blend western medical care with its drugs and its procedures with more organic methods, shifting and balancing them in order to treat the whole patient experience without shaming or dismissing any approach that *works*.

    I get so damn furious with people who think that a ‘more holistic approach’ is totally going off-drugs and ignoring those ‘ignorant Western doctors with their Big Pharma Deep Pockets’ (I typed ‘Big Pharma Depp Pockets’ and now I want those…). That ‘real medicine’ is best practiced by self-taught, internet-educated, intuitive practitioners who have little understanding of things like immunology, kidney function, and brain chemistry.

    Maybe yoga will help. Maybe dietary changes will help. Maybe antidepressants and muscle relaxants will help. The patient, and the patient’s healthcare professionals, will know that a damn sight better than anyone else. Your toolbox, there, *IS* a damn ‘holistic approach’ and these jackholes who think everything can be cured with enough Hot Yoga and turmeric smoothies are tainting the one approach that actually has any success in treating chronic conditions: steal whatever works from whatever culture has it, and do that if it helps you more than it hurts you.

    I have episodic depression I manage with social structures and what might be termed ‘actual shadow work’, but also chronic anemia I manage by having 4000 mg of iron dextran solution shot into my veins once or twice a year because my body just will not cooperate with my attempts to get it other ways. But every time I mention the anemia, someone asks me if I’ve tried a ‘holistic approach’ like eating more leafy greens or for gods’ sake fucking yoga I shit you not, like I am going to just stretch that iron back into my veins, guys. I have started replying, “Man, you mean in six years of working with a GP and a hematologist to resolve my iron issues, no one ever told me YOU CAN EAT THAT SHIT? Well, this changes EVERYTHING.”

    Thank you for letting me rant, and I am bookmarking this article for later use.

    Liked by 3 people

    2. *** But every time I mention the anemia, someone asks me if I’ve tried a ‘holistic approach’ like eating more leafy greens or for gods’ sake fucking yoga I shit you not, like I am going to just stretch that iron back into my veins, guys. I have started replying, “Man, you mean in six years of working with a GP and a hematologist to resolve my iron issues, no one ever told me YOU CAN EAT THAT SHIT? Well, this changes EVERYTHING.”***

      LOL! *snort* LOL some more. Ayep!

      Liked by 2 people

    3. I, too, am anemic. I’d love to eat more leafy greens to get iron but they all also contain magnesium which my body currently doesn’t like. If I take magnesium supplements, or even a daily vitamin with some, or eat foods with magnesium I am in the bathroom constantly with diarrhea and at one point, before I figured it out, I was having to wear depend because I was having fucking bowel accidents! My GP couldn’t figure it out. Neither could my nutritionist or my Integrative Health dr. (Who figured out part of my fatigue was a vitamin D level of 13 which my GP said was “normal”).

      After keeping a log and noting it happened about the same time every day (shortly after taking my supplements, or after eating certain foods) I started eliminating things one by one. When I told my GPA (who has record I was taking magnesium) what I thought it was he said “that makes sense since we use magnesium in treatment for constipation”. /Facepalm

      Why do I have to be my own Dr 90% of the time?!?

      Like

  27. I have ADD with comorbid depression and a sleep disorder, and you can take my Wellbutrin and sleeping pills when you pry them from my cold, dead fingers.

    Also, I would like to contribute a useful word to your vocabulary: Assholistic. You’re welcome.

    Liked by 3 people

  28. Reblogged this on endocrine gremlin and commented:
    Agree with everything said in this article. I would add that a lot of pharmaceutical companies also try to find cures for the illnesses they make money out of treating. They are not the big evil in the world.

    Like

  29. Thank you. I suffer from chronic migraines. I shared your post with my migraine sufferers support group, as well as with a friend who has EDS. I’m just going to come out and say it: “Better living through chemistry.” I do my best to help myself (to stay hydrated, sleep well, eat well — whatever that means), but the medications are a god-send. My acupuncturist once said to me, “Do you know what Western medicine does really well? Kill pain.” She wanted me to know it was okay, that I wasn’t a bad person. Because I have been made to feel like a failure for trying to help myself in the “wrong” way. Yes, our system is a mess. I’ve spent tens of thousands of dollars that I sometimes did not have just to make a Hail Mary pass at finding relief. But until the system is fixed, I’m refilling my prescription and settling my stomach with some McDonald’s fries.

    Liked by 1 person

  30. I can’t think of a way to say this properly, but I’m going to try. Thank you so much for making me feel less crazy. For the longest time, I thought everything was all in my head, that I must have Munchhausen’s or something like that, because I never “look sick” so people have always assumed I’m over reacting or faking for attention. I know that’s not the point of the article, and I’m not even sure if the things wrong with me count as chronically ill, but I was “acutely” ill for about 25 years, and this is the first time I’ve heard of someone describing feeling the same frustration, thinking it was all in their head the same way I did.

    Liked by 1 person

    2. You’re not crazy. Those of us with chronic conditions don’t just have the public railing at us, but sometimes our own doctors as well–especially if our conditions are less well-known but even common disorders get mis-diagnosed. The effect over a period of years is our questioning the reactions of our own bodies.

      My ‘imaginary’ headaches proved to be allergies, my ‘nervous condition’ turned out to be hypoglycemia, my ‘psychosomatic’ back pain turned out to be two ruptured disks. We’re even crueler to our children. At seven years old I was told I was fine and just trying to get out of taking a spelling test in school. It was measles.

      Your body knows. Listen. Believe in it and yourself. Anyone else can be politely told to mind their own business.

      Liked by 2 people

  31. it’s even worse when it’s the doctors saying this stuff. I’ve been suggested yoga so many times and I’m hypermobile??? I don’t need to be MORE stretchy thanks. And diet. Everything I’ve been suggested to diet has made me sicker.

    Every doctor I see recommends therapy, and yes I am not in good shape emotionally, but considering the main culprit in my distress is doctors brushing off my symptoms and blackmailing me into treatment I don’t want (see: I won’t try any other treatment until you take ) I don’t feel like being forced into therapy to talk to someone who is ALSO TECHNICALLY A DOCTOR will be very helpful. Especially since up until a couple years ago they were secretly calling my symptoms a conversion disorder! Excuse me for not wanting to risk therapy when it could end in discontinuation of treatment for symptoms that can actually kill me!

    I’ve tried all the natural stuff already. The only thing that has worked so far is weed but it’s more like a safer version of advil as far as pain relief goes. I have to treat my POTs with instant raman and compression stockings. I have to put rubber gloves on my feet full of moisturizer to keep the neuropathy swelling from ripping my skin apart. (before I figured this out I actually was losing decent size skin chunks)

    If chronically ill people have usable options that don’t involve doctors we will take them. But sadly only so many things will actually work. I’ve run out of holistic stuff and “big pharma” stuff (at least stuff doctors are willing to try, I’d like to try some IV options because my gastroparesis seems to fuck up pills anyway but noooooooo they won’t even try) I wish it was as easy to fix illnesses as these people seem to think.

    Like

    1. Re trying the natural stuff: When people learn I have a sleep disorder and take prescription meds for it every night, I often get “Have you tried melatonin?” “Have you tried 5-HTP?” “Have you tried valerian root?” To which I can only respond “I am a lifetime chronic insomniac who spend much of her 20s working in health food stores. Do you really think there’s anything that purports to be a natural sleep aid that I *haven’t* tried?”

      Liked by 2 people

      1. The best part? both those things make me worse. Valerian gave me migraines melatonin was actually a paradox side effect and it WOKE ME UP.

        Like

        1. I’m lucky that I react well to Melatonin, then. …Unless I get the wrong dose. Then I either go back to waking up every ten minutes, or get nightmares. Sleeping pills are good. Insomnia is the one thing -everyone- in my family, including me, has. Sleeping pills are good.

          Like

  33. Um, WORD, sister. This was a brilliant post, and YES. Yes to all the words. I will admit that I have been guilty of judging, and I have been judged. The wiser I get, the more I learn to not do the first, and forgive the second. This EDSer and Mama of two little patients is grateful to let that bullshit go: I’ve got enough on my plate without sticking my nose in peoples business, or getting ruffled when they are being ignorant. But you’re right: it can get to you after a while, and this needs to be said and read. I’m totally sharing this with my fans.

    Liked by 1 person

    1. Thank you! And yes, I will admit that I’ve been the judgy person railing for people figuring out their food issues at one point or another. And then I’ve been humbled by people doing the same to me. 🙂

      Liked by 1 person

      1. Of course you have – we all have! Anyone who says they haven’t been judgmental is a liar. Because we CARE enough to want what we think is best for others. We are all struggling so hard to find answers, and when we do, we want that for them. “If they would only do what I am doing, then they wouldn’t be feeling ___ anymore…” And…that’s what I tell myself when other people say that shit to me 😉 Keep up the good work! Are you going to the conference in August?

        Liked by 1 person

  34. My heart aches for you and all that you have to go through every day. I have chronic illnesses also and I have heard the same things as you. My body likes to destroy my thyroid so I have to take replacement hormones or die a slow painful death, my own sister thinks she can fix it with oils and energy work…… Yeah if only it was that easy

    Like

  35. I spend a fair amount of time reading social justice blogs, but I rarely comment. But I feel compelled to comment because this article is personal for me in different way than it’s personal for everyone who’s posted so far. I have much in common with the person who made the facebook comment about doing some “real shadow work” that Camilla quoted. Reading this made it clear that I’m the person harmed most by such notions about The Right Way to Be Healthy.

    I am thankful for the gift of having the parents that I do. But my parents’ beliefs about medicine haven’t necessarily been beneficial to me. They had a deep distrust of pharmaceuticals when I was born. To this day they wouldn’t see a doctor who prescribes drugs except as a last resort. Now that I’m old enough to control my own body and where I find information on how to take care of myself, I need to figure out which of their beliefs to keep and which to throw out.

    I was born before the “vaccines cause autism” scare happened, but my parents were adamant that I not be vaccinated. The rationale was that the idea of “pumping a newborn full of chemicals just didn’t seem like the right thing to do.” My parents’ decision to avoid certain medications when I was an infant was the subject of serious conflict between them and my dad’s parents, who don’t think twice about doing whatever their doctors say to do. To this day, there is lingering anger over certain preventative drugs my parents chose not to use, but their parents thought they should have. When I was in 3rd through 8th grade, I had a severe episode of depression that made it necessary to change schools twice and drop out of school halfway through 7th grade because I couldn’t cope. I saw a homeopath and crystal healer to try to treat my depression. The possibility of going on antidepressants wasn’t considered at all.

    My ability to function in school and at work has always been just barely enough to get by with my self-esteem intact, and it’s been this way since I was 7 years old. The stress of not being able to concentrate, feeling like I had no control over organization, and feeling like I had no self control moved me to quit the first really good professional job I had. I quit because I was so worried about getting fired for my low productivity that I decided it wasn’t worth it to keep working there. This problem has been the worst problem in my life, and a lot of my anxiety, depression, and hatred of school results from it.

    I got my vaccinations after I turned 18, but I was still one of the people who thought that ADHD was a fake disease invented by “Big Pharma” to make money from kids who weren’t behaving well in school, and adults who wanted a competitive advantage. I went through college knowing I was too smart to be getting the grades I was getting, and feeling like I wasn’t working hard enough to change myself. I got diagnosed with ADHD this week, and I’m desperate enough now that I’ve agreed to try medication. I got my first ever prescription that wasn’t antibiotics, to try to get my life back in control. Time will tell if it will work. Both of my parents support my decision.

    I’m still really upset about the corruption of the healthcare system in general, but now I’m willing to see it as a necessary evil that must be tolerated while we work to make it better. For years I blamed myself for being unable to be a productive member of society, and it really wore me down. I was that person Camilla quoted through and through, except I was saying those things about my own condition. I looked fruitlessly for the “emotional issues” from which my illnesses stemmed. I tried and tried to do some “real shadow work” to pull my life together. Meditation, yoga, different diets, counseling, workout regimens, and everything else I did helped a tiny bit, but I was still always out of control. Instead of looking elsewhere for answers, I just blamed myself for not having the willpower or integrity to work harder toward getting productive. The reason I put my story here to catch the victim blamers whose victim isn’t someone else.

    So thank you, Camilla, for drawing attention to this important issue. You convinced me that I should stop being so hard on myself for turning to medication in order to function at the highest level I can. You helped illuminate the source of some of the shame I feel about who I am and how I function.

    Liked by 4 people

    1. You just brought tears to my eyes! Thank you so much for sharing. I’m so touched that my words were able to help you figure out something about yourself.

      And best of luck with ADHD meds. I went undiagnosed, but knew I had it early on, until I was 24. I’m not medicated, but I most likely will be trialing medication again for it next year when I go back to school myself. So you’re not alone!

      Like

  36. Thank you from the bottom of my heart. Likewise EDS-Hypermobile, double-scoliosis, screwy gnarled hands like bonsai trees, etc. (difficult to hold a pen now), and the long, long, list of problems that tend to go along with EDS. Took me until age 46 to be officially diagnosed (after 20 years of saying–it has to be something systemic, please figure it out!–I finally diagnosed MYSELF and begged for seven months to be sent to a geneticist to make it official) and still I’m treated like a silly child. Because I’m now on a narcotic (the lowest dose possible, and not nearly enough to take the edge off most days), “the powers that be” refuse to prescribe anything else for e.g. dental work, sprains, other acute injuries, relapses. Got nothing at all after a root canal–bad enough the shots wore off during the procedure, as they tend to do with us. Now I am afraid to get any more dental work done, though I desperately need it and my teeth are literally falling apart. But since there is no legal accountability for leaving people in pain….. I wake up in the middle of the night now, heart pounding, ready to kill someone. I must have PTSD now. My last doctor…if I could, I would break the man’s kneecaps. Then I would kick his broken kneecaps and laugh. I am horrified at these thoughts–horrified at what I have become, but I ask you all, how do they expect us to react to being treated this way? I used to be a decent sort of person, but does my quality of life have no value whatsoever? How much can I be expected to put up with? I would like to spend the days remaining to me not – wanting – to – die. Is that not a reasonable request?

    Like

    1. Oh the teeth… The TEETH. I just had 6 pulled after a month on antibiotics (including IV) and narcotics… And the discovery that morphine doesn’t do jack for tooth pain. I was fortunate to find an oral surgeon who knew about EDS, though, and somehow that’s helped with my dental phobia a little. I hope you’re able to manage to get your problems taken care of as well!

      Liked by 1 person

      1. When I asked about the pain relief in advance of the last appt., the dentist said my doctor had told them I “don’t need anything.” So I canceled. Now I’m afraid to go back to the dentist and the doctor–if I complain, he might take what little pain relief I have away. I’m sore after a cleaning, let alone fillings. I am not asking for extra pain relief after a cleaning, but any time there is a drill in my mouth, it results in days of acute pain, and no one gets this. They think I’m nuts. It’s probably the same reason I’m in excruciating pain after walking on pavement as opposed to grass or a wooden floor–it’s as if my connective tissue can’t handle the vibrations. I’m guessing that’s what it is. But no one gets this. I don’t know how to make them get it. I never had any dental phobia when I was younger; I didn’t even fill that prescription after getting the wisdom teeth out at 19, and I didn’t have the gas, either–I was like a rock then. But we EDS folks tend to fall apart younger, I think. Just makes me want to break some kneecaps, and I hate that so much. I used to be a decent person! Now I feel like a wounded, cornered animal.

        Like

        1. I have a rare neuropathic pain disorder called trigeminal neuralgia. It causes severe electric shock like attacks of pain in my jaw, teeth, 1/2 my tongue and roof of my mouth. NSAIDS and opiates don’t work for it – only anticonvulsants (in my type). In some ways that’s good because I don’t get the pain med shaming from docs – I have carte blanche to take as much medication as I can tolerate. The bad news is that Tegretol is really toxic and has over 1000 drug contraindications (and I can tolerate less of it at 49 than I could in my 20’s). I am extremely grateful to the company that makes it (generic doesnt work so it’s one company). I wouldn’t be here w/o it.

          TN is also known as the “suicide disease” because of the pain and I almost went there during a severe attack many years ago. At that time, did I get advice! And I tried everything, conventional or not, including a faith healer. But the worst came from a friend of my mom’s who is a neuroscientist/psychiatrist. Because I have also been diagnosed with mental illness (depression/panic disorder/BP type II tho at that time the BP wasn’t diagnosed) the TN was not taken seriously by my family. (TN at that time was thought to only occur in individuals over 50 and I was in my early 20’s). My mom’s friend, w/o seeing me or doing any kind of exam, decided that I suffered “hysteria”. So – your Victorian comment rang true.

          I’m very fortunate. I had cranial surgery which “fixed” the problem for about 20 years. (Silly me I didn’t believe folks when they said there was no cure. Tho I did have an increased sensitivity that _shit can happen at any time_ meaning that abled folks are only temporarily abled.) Right now I’m able control it with a minimum of meds. And lead an active life – tho I’m very aware that things could change at any time.

          What is complicated for me is that well after all this happened, I went through a very stressful period in my life (breakups, unemployment, etc.) and was diagnosed as bipolar. I’m still not sure I trust this diagnosis in part because what I believe to be the psychiatric industrial complex – waaay overmedicated me. I was a “compliant” patient. I took all the meds – all 9 of them – every day. I did not need ALL of these meds but I still take some of them (I absolutely need imipramine to control panic attacks, for ex.)

          I believe in not “throwing the baby out with the bathwater” in that some of these meds are important and work _for me_ _at this time_. I still see a psych and am fortunate to have a relationship where I feel treated equitably – he does not force pills on me and we discuss treatment plans. But the whole experience got me thinking about profit and pills and I confess I have used the phrase “big pharma” in discussions in that context. But I’ve also talked about our fucked up medical system of which pharmaceutical companies are just a part. It’s a complex system.

          What is a better way to refer to this messed up medical system? Medical industrial complex maybe? But again, I want a way to make it clear that while there are big big problems with it – there are important lifesaving and life enhancing benefits.

          Many thanks for your post.

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  37. Thank you for this. I feel like we are kindred spirits. I still feel like I’m lying when I’m at the doctor due to 2 decades of being so sick and told I’m fine or that a simple zyrtec or amoxicillian will work. Meanwhile I was being killed from vasculitis. I’m sorry that everyone that reads this and can relate has gone through hell. But we are strong!!

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  39. Thank you for making me feel sane. I have not read an account so precise and accurate. I double check every time I go see a doctor to see whether my arguments stand and whether I am able to argue my sanity. Front-desk clerks that schedule appointments tend to tell me that my case is not a rush one, since I am clearly okay.

    You’ve made me realize I have been in the “sick and traumatized by it” club for years. I had not connected the dots before quite like this.

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  40. Thank you, that was really fun to read, I was reminded of ways I’ve thought about handling that sort of helpful uneducated batbrain advice.
    In the 80’s when AIDS first started hitting the US, there was a very well known self help guru that was all about “you create your own reality” and “pain is only an illusion” so not only were my young gay friends of mine dying but they felt like they had somehow brought it on themselves. I was in my early 20’s, punkrock and I just wasn’t having it, so whenever someone started regurgitating that guilt guru stuff, I’d kick them in the shins. They would say “OW!” and I would reply “you create your own reality, pain is only an illusion!”
    The other thing you piece made me think of is this hilarious comic called “Hyperbole and a Half”. The author has chronic illness-depression, and has a piece about going around to people with a variety of acute visible issues and offering the kind of advice we all get. She says to a guy with blood gushing out where his arm used to be to meditate more and take supplements or tells a person having a heart attack to eat more salad-stuff like that.
    Thanks again for putting your voice to the outrage incited by the ubiquitous, oblivious do-gooder oafs in our lives.

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  41. THANK YOU! As someone who had suffered with headaches for a while thinking it was just the result of chronic pain, I hated when anyone had the nerve to tell me that it had to be the result of something that I was doing wrong, like eating a bad diet, not exercising, not getting enough sleep, stressing, etc. With that said, I tried to solve my problem by fixing all these problems (getting plenty of sleep, relaxing, exercising, eating well, etc.). However, at the end of the day NOTHING worked, so OTC pain meds were my best “solution” at the time, if for no other reason than because of the placebo effect. Anyway, even though it later turned out that the headaches were actually the result of a brain tumor, it still really pissed me off when people would give me looks for taking so many meds or tell me that I needed to get more sleep or whatever- because sometimes that’s STILL NOT GOOD ENOUGH.

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  42. Thank you so much for this. I have endometriosis, and that brings about its own sort of sexist gaslighting. I realized the other day that the amount of mansplaining doctors have done about my illness (“it can’t hurt that bad”, “you’re just depressed”, “all women go through this”) really should merit me a fucking fainting couch and a hoop skirt.

    Furthermore, if yoga and herbs fixed everything, nobody would be ill. This is clearly not the case. (And I defy those people to do yoga when walking to use the bathroom makes you faint. Warrior pose is a bit more difficult, kthx.)

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  43. Camilla Laurentine thank you for your concise articulation of a severe issue that even most doctors have little grasp. The life issue of chronic illness and chronic pain is an incredible hardship to bear. Sufferers feel their life is passing them by, and somehow, someway feel they have done something or are doing something wrong. Nothing is further from the truth. Unfortunately, our health industry and society at large has very little idea of the issues faced minute by minute by chronic pain patient. The well meaning phrase “How are you” is enough to shake my sensibility to core. Thank you for your time and talent in bringing many chronic suffers issues to light. Keep smiling, many of us do understand,

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  44. Thank you. Just thank you so much. this has articulated exactly the problem with saying “It’s all about Big Pharma” in a way that I’ve been trying to for years, but never quite put together.

    I’m a fellow EDS3er, and the number of doctors I’ve met who happen to be working as checkout girls or waiters or taxi drivers is amazing – At least, I assume that they’re doctors since they tell me that taking medication is Evil and Wrong and I should eat nothing but green beans and coconut forever. Or that I should do pilates/yoga/zumba.

    Everyone needs to butt out.

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  45. Also a fellow EDS-er. Thank you so much for this beautiful article. I also have a severe case of thoracic outlet syndrome as a result of my shoulders constantly dislocating and rounding forward when I was younger. I don’t get online very often as a result but definitely want to find more support in the disabled community.

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  48. Yes! This!
    I’m gonna start treating my rare epilepsy holistically. See how well that works out for me. (But you know, not really. . . because I don’t want to be dead by the end of the month.)

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  49. Wow, This was so moving, I have seasonal asthma, generalized anxiety disorder, pseudo-tumor ceribrii, arthritis, and joint issues that I am going to be approaching my doctors about for them to test me for Ehlers Danlos Syndrome, and at least a few other diagnoses. I have gone past invisible disability in that I use crutches to help we walk through the pain. The number of comments I get, even from medical professionals, about what I should try is astounding. To anyone who tells me to expercise more – and how am I supposed to do that with dislocating knees that refuse to hold my entire body weight, and pain severe enough that I lay in bed some days contemplating if wetting the bed or standing up will be more painful in the long run?

    I am especially interested in your statement connecting your pseudo-tumor with EDS – where did you get that info? If I can show my doctors that link, it might help in my EDS diagnosis.

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    1. Dr Diana Driscoll is working on studies connecting pseudotumor, POTS, and HEDS. I’m not sure if she’s published anything yet on it or not, but if you look up prettyill.com, I believe that’s her website. In the general NIH booklet, I believe there’s mention about it in the neurological manifestations. I had been talking to people in the EDS groups for quite some time about the connection, and there must be something that’s come out recently. My neurologist mentioned at our last appointment that they were finding connections between the two, and he’s a professor at a teaching hospital so he keeps up on it thankfully.

      Hope that helps!

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      1. Thank you. Because of my other diagnosis of arthritis, many of my joints have started to freeze, which covers up the history of hypermobility. So I am looking at as many co-morbidities as I can to support to my doctors why I think we should look into an EDS diagnosis for me.

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        1. No problem. I can’t remember if EDS has the wording “Or have you ever been able to” with the Beighton Score, but I know it counts towards the joint hypermobility syndrome diagnosis. Which if you luck out will land you with an EDS diagnosis when co-morbid with other associated things. Good luck!

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  50. Oh yes! So emotional issues caused a genetic mutation in my DNA causing my EDS, Sjogrens, and related issues? I’ve gotten it wrong all these years!

    Seriously tho, I’ve not met an EDSer, let alone anyone, with bakers yeast issues. I call mine a “sensitivity” since it can’t really be allergy tested. My main issue from it is diarrhea, and anything with magnesium in it. Go figure. Which limits my diet immensely. On top of that add the nausea from long term NSAID use (and I still take upwards of 4000mg a day along with celebrex (max dose), and Lyrica, and 5mg of Oxycodone every 3hrs and I stull FUCKING hurt all the time) and the types of food that sound good are limited. My diet revolves around crackers, pepperoni slices, Raman noodles, Red Baron garlic cheese bread, PB (by the spoonful) and Reece’s PB cups. And that’s about it.

    I have severe OA in both hands, no cartilage left in either thumb. Also, hips (right hip has no cartilage), knees, ankles, balls of my feet, toes, and the bones in the top of my feet. So standing or cooking meals is difficult for me. My husband has RA & MS and still works 50-70 hrs a week, he averages 60ish. I would love to eat healthier, but quick fix meals are my staple.

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